Dr. Caspi confirms my experience and knowledge of the Alzheimer's Association, as a former researcher and program director at the National Institute on Aging, and a geriatric psychiatrist. Before I understood how most disease advocacy organizations were so intertwined with drug companies, I was surprised how the Alzheimer's Association and others gave so much press and emphasis to drug treatments. Later I learned that the Alzheimer's Association and their lobbying arm--the Alzheimer's Impact Movement--take millions from pharmaceutical and device companies. Their CEO in 2023 made over $1.2 million, and the other 3 top officers close to 3/4 of a million dollars as per the Form 990 available on their website.
When I was at the NIA, I attended a meeting where the Alzheimer's Assocation was pushing hard for Medicare to cover amyloid PET scans, even years before the amyloid antibody drugs were available (which I woudn't prescribe due to their lack of demonstrated effectiveness and side effects). I published a record of this meeting in JAMA: https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/1857096
The first word that comes to my mind after reading this is "creepy". However, I feel the need to share some of my experiences as an international member of the ISTAART, and the disrespectful relationship it holds with its international membership (particularly from Latin America and Africa).
My first AAIC was the (then) ICAD>11 in Paris. Back then, it was a more scientific and serious conference, mostly with North American and European speakers, but a higher level of discussions. I joined the ISTAART as a paying member right after.
I became a reviewer of Alzheimer's & Dementia in 2014, and a top reviewer for the journal for several years in a row. I also reviewed for its sister journals. I reviewed 60 articles for the main journal in seven years, but was never invited into the editorial board.
Things started to fall apart back in 2017, about when the Alzheimer's Association® formed an alliance with the Global Brain Health Institute. They split Latin America in two, chose "the Latin America" that they wanted to work with, and started to promote it as a rising continent in dementia research thanks to its actions (as if we needed international assistance to do quality research).
I was applauded and dismissed to the side of the (more than 95%) of Latin American members of the ISTAART who were "excluded". However, they did not take very good care of the job they were doing, and I was the first Latin American working in Latin America to be elected to the Executive Committee of a Professional Interest Area (after six failed attempts), and I also joined the ISTAART Advisory Council in my second attempt in 2018. It was the worst international experience of my career so far.
First of all, some international researchers that I barely know started to insult me and spread lies about me behind my back. The ISTAART did nothing to shield me from that. Second of all, this council should be dedicated to fight the problems that the ISTAART membership faces to conduct its voluntary work to promote dementia science. In my view, the worst one is that some groups just want to take control of everything and select who they will work with based on political criteria (and I mean mostly the Global Brain Health Institute). Not only did the council disregard these problems, but they did what they could to suppress those who were fighting to solve them. After I left, in 2021, they changed the entire composition of the council to serve their political needs. Instead of adding members who had experience with the Professional Interest Areas and who could view their problems more clearly, they just added new members who could approve what was politically interesting for the Alzheimer's Association®. In the end, the Chief Science Officer thanked me for "everything that I was doing".
They started hiring ISTAART staff who had connections with the Global Brain Health Institute, and I was (once again) discriminated and humiliated. This seems to be common practice within the Alzheimer's Association®. Concerning its marketing materials, they did what they could to minimize the importance of Latin Americans, from avoiding scientific titles when naming them to including in leadership positions mostly those who were affiliated in some form with the Global Brain Health Institute. In the end, they also left Alzheimer's & Dementia without an editor-in-chief because it served their political purposes better.
Naturally, I had to fight back. I have leadership positions in the American Academy of Neurology (before its 40,000+ members) and in the International Parkinson and Movement Disorder Society (before its 12,000+ members). I am a member of the editorial boards of six different journals, including the Journal of Alzheimer's Disease and a few others that are among the best in the field. I have also worked with a great number of international researchers, and my visibility helped me start to gather political support for my views. All my growth in these international societies made up for the exclusion in the ISTAART (which can hardly gather the same number of international members, even though Latin Americans and Africans do not need to pay a cent today).
More recently, the Alzheimer's Association® published the list of plenary session speakers for the AAIC>24, its annual conference taking place in Philadelphia in July. As usual, North Americans and Europeans are invited to talk about topics involving cutting-edge technology, basically in the areas of biomarkers.
What draws attention once again is the neglect of research in economically disadvantaged centers, as occurs in Africa and Latin America. In 2023, an African was invited to speak about the epidemiology of dementia in Africa. This year, an Argentinean was invited to speak about initiatives for "dementia research in low and middle income countries". Once again, the image they want to convey is that, if there is no money, there is no intellectuality. To make matters even worse, it is a known fact that Brazilians were involved in the selection of these speakers, probably in the hope of obtaining political favors in return. I wouldn't be surprised to see these same Brazilians speaking on similar subjects in the following years.
It is possible to lead and do Science with quality by optimizing available resources. Federal Universities such as the Federal University of São Paulo (UNIFESP) and the Federal University of Rio de Janeiro (UFRJ) constantly prove this statement, despite the lack of resources. On the other hand, the "developed" world tries to sell drugs that do not work as a strategy to compensate for the poor results obtained with their million-dollar research.
My last Alzheimer's Association® conference was the AAIC>23 in Amsterdam last year. It is amazing how these conferences have become increasingly political and less scientific over time. Fortunately, this is not the case for every international society, but I definitely plan to select more rewarding destinations for my money from now on.
In the end, the Alzheimer's Association® should be held accountable for its international actions, too. However, if they were willing to change their views, we could once again see the meaningful difference that their educational programs and international policy can make to the lives of researchers. In turn, this could enable them to realize their full potential in better serving their constituency at an international level.
In January 2020 immediately following the publication of our ‘landmark’ (as described by George Perry, Editor-in-Chief of JAD) paper on Al in brain tissue in FAD, two anonymous comments were posted on website PubPeer. This website describes itself as ‘the online journal club’. Really? An online journal club that supports anonymous comments about peer-reviewed published science. PubPeer is no more than a publishing platform for trolls. A recent review of the content of this site found that almost 90% of submitted comments were anonymous. The owners of the site stating that anonymity protects graduate students wishing to comment on published science. Really? Or perhaps it is because no one used the site before they introduced anonymity. Either way, why would any repoutable scientist use this platform for science?
The anonymous comments were made by someone calling themselves Hoya camphorifolia, a plant. An interesting choice of disguise for a troll, charged with planting seeds of doubt into any published science that does not follow the industry narrative.
We now learn that the anonymous plant Hoya camphorifolia is Abraham Al-Ahmada ‘scientist’ working at Texas Tech University. One does wonder how this person has time to do any science bearing in mind that he has made over 2000 comments on PubPeer over the past few years. He is clearly a talented polymath as he has no reservations about commenting upon almost any subject. He has used his extensive knowledge and understanding to follow up his anonymous comments on PubPeer to submit a Letter to the Editor on our paper (and indeed all of our research on aluminium in human health).
I have no issue with any legitimate commentary on our research. In fact I welcome all informed discussion of our published research.
I do have an issue with how this Letter to the Editor has come about.
I would like George Perry to explain why in February of this year, four years after the anonymous comments were left on PubPeer, he invited an anonymous plant to write a Letter to the Editor about their issues with our paper. Is this normal practice for a journal editor? If so, why now, why not when the anonymous comments were made in January 2020.
I am then further perplexed by what exactly constitutes a Letter to the Editor? In my forty years or so in science I have always understood that Letters to the Editor about a paper published in their journal would in the first instance be peer-reviewed, commonly by the original reviewers of the published paper. If upon peer review it is decided that the Letter is worthy of publication then the authors of the paper in question are afforded an opportunity to reply to the Letter. I would like George Perry to explain why this procedure was not followed for this Letter about our paper.
I have supported JAD with my very best research almost since the first volume. I have enormous respect for George Perry, an exceptional scientist and an editor with integrity. The latter being something of a rarity these days. So, why did George Perry follow this course of action? Why did he decide to allow a known troll to publish a non-peer-reviewed unfounded comment about a paper that he himself described as a ‘landmark’ paper. George Perry has always, at least up until now, stood up for fairness and integrity in science. He has always put good science first. What or who changed this?
I have never replied to any anonymous, non-peer-reviewed comments about our research. I am not about to start doing so now. For an editor that I have always held in very high esteem to ask me to do so now is to say the very least disappointing but even more it is worrying that someone with intergrity might be so easily corrupted, probably by the power of publishers and those that control them. The aluminium industry failed in preventing science opening up their Pandora's box. We now only have to look inside to know the damage that aluminium continues to wreak on humanity.
I cannot believe that you have published this complete scientific nonsense without it being peer reviewed by the original reviewers of the paper. Surely this is the usual practice for any Letter to the Editor? If following such peer review the conclusion was that the points raised had some legitimacy then we would have gladly answered such comments. You did not afford us this opportunity and for someone who has published with JAD almost from its first volume this is extremely disappointing.
I appreciate the comment by Dr John Savory and I thank him for his time and support. However, he is not to know the nature of the individual submitting these comments. He is also not to know that this individual has been writing his scientific nonsense on behalf of the aluminium industry on every open platform on the internet. He is a troll, no more or less. I am appalled that JAD has not recognised this. He will now use your letter to support his views throughout the internet. You are allowing him to spread his misinformation through a respected source, JAD.
I also question the suggestion by the author of this internet nonsense that you, JAD, actually asked for comments on this paper. Is this true?
In addition to the huge role of gut dysbiosis, oral dysbiosis is very important factor often overlooked.
It raises the importance of detecting MCI and evaluating oral health so that this factor can be addressed to prevent the development of AD
Diet's role in AD is multifaceted. This article calls attention to that.
It is essential that a great effort is made to intevene dietarily during Mild Cognitive Impairment so that many instances of AD can be prevented
Dr. Caspi confirms my experience and knowledge of the Alzheimer's Association, as a former researcher and program director at the National Institute on Aging, and a geriatric psychiatrist. Before I understood how most disease advocacy organizations were so intertwined with drug companies, I was surprised how the Alzheimer's Association and others gave so much press and emphasis to drug treatments. Later I learned that the Alzheimer's Association and their lobbying arm--the Alzheimer's Impact Movement--take millions from pharmaceutical and device companies. Their CEO in 2023 made over $1.2 million, and the other 3 top officers close to 3/4 of a million dollars as per the Form 990 available on their website.
When I was at the NIA, I attended a meeting where the Alzheimer's Assocation was pushing hard for Medicare to cover amyloid PET scans, even years before the amyloid antibody drugs were available (which I woudn't prescribe due to their lack of demonstrated effectiveness and side effects). I published a record of this meeting in JAMA: https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/1857096
The first word that comes to my mind after reading this is "creepy". However, I feel the need to share some of my experiences as an international member of the ISTAART, and the disrespectful relationship it holds with its international membership (particularly from Latin America and Africa).
My first AAIC was the (then) ICAD>11 in Paris. Back then, it was a more scientific and serious conference, mostly with North American and European speakers, but a higher level of discussions. I joined the ISTAART as a paying member right after.
I became a reviewer of Alzheimer's & Dementia in 2014, and a top reviewer for the journal for several years in a row. I also reviewed for its sister journals. I reviewed 60 articles for the main journal in seven years, but was never invited into the editorial board.
Things started to fall apart back in 2017, about when the Alzheimer's Association® formed an alliance with the Global Brain Health Institute. They split Latin America in two, chose "the Latin America" that they wanted to work with, and started to promote it as a rising continent in dementia research thanks to its actions (as if we needed international assistance to do quality research).
I was applauded and dismissed to the side of the (more than 95%) of Latin American members of the ISTAART who were "excluded". However, they did not take very good care of the job they were doing, and I was the first Latin American working in Latin America to be elected to the Executive Committee of a Professional Interest Area (after six failed attempts), and I also joined the ISTAART Advisory Council in my second attempt in 2018. It was the worst international experience of my career so far.
First of all, some international researchers that I barely know started to insult me and spread lies about me behind my back. The ISTAART did nothing to shield me from that. Second of all, this council should be dedicated to fight the problems that the ISTAART membership faces to conduct its voluntary work to promote dementia science. In my view, the worst one is that some groups just want to take control of everything and select who they will work with based on political criteria (and I mean mostly the Global Brain Health Institute). Not only did the council disregard these problems, but they did what they could to suppress those who were fighting to solve them. After I left, in 2021, they changed the entire composition of the council to serve their political needs. Instead of adding members who had experience with the Professional Interest Areas and who could view their problems more clearly, they just added new members who could approve what was politically interesting for the Alzheimer's Association®. In the end, the Chief Science Officer thanked me for "everything that I was doing".
They started hiring ISTAART staff who had connections with the Global Brain Health Institute, and I was (once again) discriminated and humiliated. This seems to be common practice within the Alzheimer's Association®. Concerning its marketing materials, they did what they could to minimize the importance of Latin Americans, from avoiding scientific titles when naming them to including in leadership positions mostly those who were affiliated in some form with the Global Brain Health Institute. In the end, they also left Alzheimer's & Dementia without an editor-in-chief because it served their political purposes better.
Naturally, I had to fight back. I have leadership positions in the American Academy of Neurology (before its 40,000+ members) and in the International Parkinson and Movement Disorder Society (before its 12,000+ members). I am a member of the editorial boards of six different journals, including the Journal of Alzheimer's Disease and a few others that are among the best in the field. I have also worked with a great number of international researchers, and my visibility helped me start to gather political support for my views. All my growth in these international societies made up for the exclusion in the ISTAART (which can hardly gather the same number of international members, even though Latin Americans and Africans do not need to pay a cent today).
More recently, the Alzheimer's Association® published the list of plenary session speakers for the AAIC>24, its annual conference taking place in Philadelphia in July. As usual, North Americans and Europeans are invited to talk about topics involving cutting-edge technology, basically in the areas of biomarkers.
What draws attention once again is the neglect of research in economically disadvantaged centers, as occurs in Africa and Latin America. In 2023, an African was invited to speak about the epidemiology of dementia in Africa. This year, an Argentinean was invited to speak about initiatives for "dementia research in low and middle income countries". Once again, the image they want to convey is that, if there is no money, there is no intellectuality. To make matters even worse, it is a known fact that Brazilians were involved in the selection of these speakers, probably in the hope of obtaining political favors in return. I wouldn't be surprised to see these same Brazilians speaking on similar subjects in the following years.
It is possible to lead and do Science with quality by optimizing available resources. Federal Universities such as the Federal University of São Paulo (UNIFESP) and the Federal University of Rio de Janeiro (UFRJ) constantly prove this statement, despite the lack of resources. On the other hand, the "developed" world tries to sell drugs that do not work as a strategy to compensate for the poor results obtained with their million-dollar research.
My last Alzheimer's Association® conference was the AAIC>23 in Amsterdam last year. It is amazing how these conferences have become increasingly political and less scientific over time. Fortunately, this is not the case for every international society, but I definitely plan to select more rewarding destinations for my money from now on.
In the end, the Alzheimer's Association® should be held accountable for its international actions, too. However, if they were willing to change their views, we could once again see the meaningful difference that their educational programs and international policy can make to the lives of researchers. In turn, this could enable them to realize their full potential in better serving their constituency at an international level.
In January 2020 immediately following the publication of our ‘landmark’ (as described by George Perry, Editor-in-Chief of JAD) paper on Al in brain tissue in FAD, two anonymous comments were posted on website PubPeer. This website describes itself as ‘the online journal club’. Really? An online journal club that supports anonymous comments about peer-reviewed published science. PubPeer is no more than a publishing platform for trolls. A recent review of the content of this site found that almost 90% of submitted comments were anonymous. The owners of the site stating that anonymity protects graduate students wishing to comment on published science. Really? Or perhaps it is because no one used the site before they introduced anonymity. Either way, why would any repoutable scientist use this platform for science?
The anonymous comments were made by someone calling themselves Hoya camphorifolia, a plant. An interesting choice of disguise for a troll, charged with planting seeds of doubt into any published science that does not follow the industry narrative.
We now learn that the anonymous plant Hoya camphorifolia is Abraham Al-Ahmad a ‘scientist’ working at Texas Tech University. One does wonder how this person has time to do any science bearing in mind that he has made over 2000 comments on PubPeer over the past few years. He is clearly a talented polymath as he has no reservations about commenting upon almost any subject. He has used his extensive knowledge and understanding to follow up his anonymous comments on PubPeer to submit a Letter to the Editor on our paper (and indeed all of our research on aluminium in human health).
I have no issue with any legitimate commentary on our research. In fact I welcome all informed discussion of our published research.
I do have an issue with how this Letter to the Editor has come about.
I would like George Perry to explain why in February of this year, four years after the anonymous comments were left on PubPeer, he invited an anonymous plant to write a Letter to the Editor about their issues with our paper. Is this normal practice for a journal editor? If so, why now, why not when the anonymous comments were made in January 2020.
I am then further perplexed by what exactly constitutes a Letter to the Editor? In my forty years or so in science I have always understood that Letters to the Editor about a paper published in their journal would in the first instance be peer-reviewed, commonly by the original reviewers of the published paper. If upon peer review it is decided that the Letter is worthy of publication then the authors of the paper in question are afforded an opportunity to reply to the Letter. I would like George Perry to explain why this procedure was not followed for this Letter about our paper.
I have supported JAD with my very best research almost since the first volume. I have enormous respect for George Perry, an exceptional scientist and an editor with integrity. The latter being something of a rarity these days. So, why did George Perry follow this course of action? Why did he decide to allow a known troll to publish a non-peer-reviewed unfounded comment about a paper that he himself described as a ‘landmark’ paper. George Perry has always, at least up until now, stood up for fairness and integrity in science. He has always put good science first. What or who changed this?
I have never replied to any anonymous, non-peer-reviewed comments about our research. I am not about to start doing so now. For an editor that I have always held in very high esteem to ask me to do so now is to say the very least disappointing but even more it is worrying that someone with intergrity might be so easily corrupted, probably by the power of publishers and those that control them. The aluminium industry failed in preventing science opening up their Pandora's box. We now only have to look inside to know the damage that aluminium continues to wreak on humanity.
I cannot believe that you have published this complete scientific nonsense without it being peer reviewed by the original reviewers of the paper. Surely this is the usual practice for any Letter to the Editor? If following such peer review the conclusion was that the points raised had some legitimacy then we would have gladly answered such comments. You did not afford us this opportunity and for someone who has published with JAD almost from its first volume this is extremely disappointing.
I appreciate the comment by Dr John Savory and I thank him for his time and support. However, he is not to know the nature of the individual submitting these comments. He is also not to know that this individual has been writing his scientific nonsense on behalf of the aluminium industry on every open platform on the internet. He is a troll, no more or less. I am appalled that JAD has not recognised this. He will now use your letter to support his views throughout the internet. You are allowing him to spread his misinformation through a respected source, JAD.
I also question the suggestion by the author of this internet nonsense that you, JAD, actually asked for comments on this paper. Is this true?